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Tuesday, August 19, 2014

No Ice Bucket Challenge for Me

It happened. I got "nominated" for the currently Internet-famous ALS Ice Bucket Challenge.

I figured I would since it is viral and all. And I wasn't sure how I would choose to respond right up until the moment it did happen. And when it did, my gut response was an immediate quite, "No, thank you."

In case you've been living under a rock, the ice bucket challenge goes like this: You stand in front of a camera, say you've been nominated for the "ALS Ice Bucket Challenge", nominate a handful of friends, then dump ice cold water over your head on camera. Skip the challenge, donate $100 to ALS instead... some good folks dump and donate.

It's more or less amusing. And the ALS Foundation has made an incredible amount of money in the last couple of weeks. I hope more people now know what ALS is, and took a few minutes to learn about the disease prior to the big ice dump. Because that was, after all, the point. And the point is a good one.

Soooo... why is it not for me? Well, purely selfishly, I despise the cold. My vaso-dialating medication makes me particularly susceptible to it. I also worry the shock of cold would make my heart jump, and that we can not have. When that happens it is uncomfortable and it scares me. It's the simple fact that I have my own rare disease to contend with. That's where my focus is.

Perhaps I have a bit of compassion fatigue. More sensitive than is probably good for me, the plights of others affects me deeply, whether I know them or not. If I reacted to every cause that touched my heart I'd be dead broke and exhausted. Perhaps I look at this whole ALS thing and I get it so deeply and personally, that I don't feel the individual need to get on the trend bandwagon.

The truth is, I don't know anyone with ALS. And not that that means those who suffer from it don't deserve our support. It's a hideous disease that takes lives. I get that. Oh, do I get that. But right now I'm watching a dear friend in the fight of her life against cancer. I watch her kid when she goes for treatment. I worry about her every day. I worry about people in my own disease community. I worry about a lot every day.

I watched a video this morning of the man who started it all, Pete Frates. I made my son watch it as well. This is because yesterday I got a video from a friend of my own kiddo doing the challenge. When he got home I asked him if he knew what ALS was, and why would he do the challenge? He didn't have an answer to either question, and we had a long chat. Now he knows. And I'm proud my boy has a little more knowledge and compassion because of it.

Back to Pete's video... in it he goes to the FDA to plead for better treatments, faster movement on research. I've twice been in those same halls, even that same room I think, having the same conversation with the FDA. I wonder if he got anywhere with them? I wonder if I did? I wonder what the sum of each of our actions and plea for a better tomorrow come to. Right now Pete's result is pretty damn impressive. I'm happy for him. I hope the same for all of us fighting a rare disease.

So many of you have dumped icy water over your head and made a generous and heart-felt donation to a cause that has caught your attention. For that, I thank you. To be noticed, to be supported, to be cared for... that's half the battle while we wait for the cures we so need.

Always moving forward, I wonder what the coming months will look like. I imagine non-profits all over the world are wracking their brains for a way to replicate the phenomenon. The ALS Foundation has gotten a pretty impressive sum of money... and I have to tell you... it isn't enough. Research is so expensive. A good research program will blow through that new sum in a heartbeat.

If you truly have awareness, if a cause is truly something that has caught your attention, take it past the viral video stage. Take it to monthly or yearly donations. Take time to research what it is you just supported. Take time to actually get to know someone who suffers from the illness and understand their days, their wishes, their trials... not just the name of their cause.

And watch Pete's video here. Because even though I won't be dumping ice cold water over my head, I wish him and his sweet growing family nothing but a miracle and the very best.

2 comments:

I'm so glad I found out about your blog. I follow Generation Hope blog and saw your article. My name is Michelle and I was diagnosed with PPH in 2000. I used to write on my blog, but did not keep it going. Can't wait to read more of yours! Thank you for sharing!

Hi Michelle! Glad you found me! I hope you enjoy the blog! Stop by sometime and share the link for yours - writing does so much good, not only for us (the writer), but hopefully for our readers too. I wish you well!

About Me

I am a mom in my 30s. I was diagnosed with Pulmonary Arterial Hypertension in January of 2008. When someone is diagnosed with PH they are often told, "Welcome to your new normal." This is meant to be a comfort of sorts, but actually I really dislike the phrase. Nothing about PH is normal. And I sure as hell didn't welcome it! But... it is here. And instead of letting a diagnosis define "a new normal", I'm trying to re-define a normal for the diagnosis. On my terms. This blog chronicles that attempt.